A combination of TV and readings on palliative care approaches brought together some thoughts. I watched the SBS program Dateline, on euthanasia in Belgium and it was quite intense in the conflicting feelings it generated. It actually showed the final moments of a lady who had chosen to die, who had gone through all the medical checks and balances required by law even though she was not suffering pain or a terminal illness. It was her choice and it was accommodated.
The doctor administered a syrup which she drank steadily and willingly. She was dead within 5 minutes utterly peaceful and quietly. The legal aspects related to this death were a major focus of the program but I think I was mostly amazed at the pragmatic and very quiet approach to the whole thing.
None of us of course is unaware that euthanasia is a political and ethical minefield. We know that administering anything that causes death is murder in Australia. Euthanasia is deliberate and intentional death. The provision of narcotics that are given to alleviate suffering that may have consequences of hastening death is legally recognised as the concept of double effect. The aim is to relieve suffering, which is a valid and required intervention.
One article was a slightly dated British Medical Journal (BMJ, 2003), Care of the dying patient: the last hours or days of life. The authors claimed that too many patients die an undignified death with uncontrolled symptoms and recommended that the hospice model of care for dying patients should be actively promoted and incorporated into all acute health services.
About the time this article was written I was teaching about palliative care in a number of regional aged care facilities. The concept “Diagnosis of Death” was part of the content and I recall just how anxiety provoking this idea was. The BMJ article was of course promoting the idea that the doctor had to undertake this complex activity but as we know, particularly in the various settings nurses find themselves working, it is nurses who are asked “how long”, “is she dying” and we know how hard it is to answer these questions.
In the 10 years since I gave those lectures I wonder if our society has become less death denying and if nurses are more active in helping families come to grips with the imminent death of a loved one. Certainly palliative care approaches to care and patient management have improved. Among the aims of palliative care are it offers a support system to help patients live as actively as possible until death and offers a support system to help the family to cope during the patient’s illness and in their bereavement.
Is there any one of us who hasn’t had a friend, family member or acquaintance who did not experience this and as a consequence has terrible memories, unresolved grief and anger often focused at the nurses or institution that “failed them”? As the BMJ article pointed out, cases continue to occur of patients dying in distress with uncontrolled symptoms and relatives being unsupported at this vulnerable time in their lives.
Another article reported a major audit of acute services in 2003 that has yet to be replicated. At the time there was evidence of poor symptom management with 0% of patients having their pain assessed using a standardised pain assessment tool, while 52% of patients experienced episodes of uncontrolled pain, and only 35% having a break through analgesic order. There was evidence to suggest that only 31% of patients knew they were dying, while 80% of families were aware that the person was dying. 90% of patients had a “do not resuscitate” order with the majority of these orders being obtained in the last 24 hours of life.
Aside from pain and other sources of physical distress, the key characteristic that distinguishes the dying process as experienced by the elderly from that experienced by younger groups, is the nearly universal occurrence of long periods of functional dependency and need for family caregivers in the last months to years of life. No matter where the nurse works, it is inevitable that we are involved with clients who have reached this stage. Are we able to assist in a meaningful way to identify needs other than those of dependency and physical cares?
The 84 year old Belgium lady who chose euthanasia was living in an aged care environment but was neither in pain or poor health for her age. What I interpreted was she just plain wanted to die and believed that after death she would be reunited with her daughter. This was the basis of the doctor’s support for her request. It was her choice, her wish, her desire. There were no emotional or cognitive aspects that raised questions about her decision.
That has never been my experience as a nurse. I have worked with many patients who “wished for death” were anxious about the dying process and fearful of the suffering that might be involved. But pain free and healthy? No not in my experience. Yet as a citizen and an aging one at that, I know many people who while hale and healthy do have worries about how they will experience aging and dependency, illness and dependency and of course dying.
I think we have moved forward in our recognition of the needs of the dying over the last decade. I think that the euthanasia debate is an indicator of changing attitudes and individuals desire for control over their fate. If peoples’ natural fears are exacerbated by poor care and stories about bad deaths and grief is worsened by anger and frustration at how the loved one is treated then one of the most valuable and important aspects of nursing is diminished; our ability to ensure a pain free and dignified death. Ensuring a good death for all is a major challenge not just for health professionals across the board but particularly to us as nurses. We are affected as individuals and as professionals when we see failures in the management and support of our clients. We are often thwarted by the system and those who have “power”.
We too are damaged by these situations so it is important we have both the resilience to deal with them and the capacity to insist on adequate responses to our high standard pain assessments, our analysis of needs and quality communication with the client and their families. It is how we phrase our questions and invite clients and families to respond and feel safe to ask the hard questions rather than confronting them with a frightening reality that can open the way for discussion and exploration of options.
The transfer from home or residential care to acute services when death is imminent is frequently a decision made from fear and inability to accept a death that while inevitable was denied and discounted because of perhaps cultural or social inhibitions, anxiety about how to care during those last moments or for a family feeling helpless and unsupported. That last ambulance ride and acute admission is I suspect a burden and a terror.
Watching the TV program I found myself comparing my experiences, particularly as a young nurse in acute environments, they were nothing like the calm, controlled and accepting death that the lady experienced. Working in palliative care situations however did provide a far more satisfying professional experience. I watched that lady die and realised I envied her.